I'm into my 2nd mos. of IV Rocephin. I have 5 good days in a row and had my kids out to the Movies, Dinners, Fishing, the Park, and more. I see my LLMD on day 6 and report I feel 35-40% better from my terrible baseline. Perhaps I've turned the corner.
Too good to be true...........
That same night, I have the kids out for dinner again. Out of nowhere, my balance starts to go and I feel like I'm gonna fall out of my chair. My head starts pounding and I break out in a sweat, but no Anxiety. I just feel sick. So we get up and leave. Thank god, I didn't stray far from home.
The last 2 days, I've been doing that pathetic crying like a 2 year old. My anxiety is also off the charts.
Drugs like Xanax and Ativan do squat. I've tried a ton of AD's in the past and they only make me feel worse. Well, in my case, it's all Neuro causing this crap or it's part of Herx. Not sure b/c everyone always tells me I'm Herxing. I can't tell the difference, and I really don't care b/c the emotional stuff is out of my control.
I'm so tired of letting those around me that care about me and love me, see me like this. I can't even control it in front of my own kids, and that is the worst.
I would love to hear some sort of suggestion other than to accept it.
Gary
Posted by ping (Member # 6974) on :
Gary, I'm sorry you're having such a rough time of it; seems like you've been going through it for a long time now.
Suggestions... Well, first, from your activities description, it might be that you just plain over-did it. I know when I had good days, I'd go like crazy and pay the price next day, or days after that.
Will your doc let you reduce the amount of IV Rocephin, temporarily? This might help; can't promise anything.
Also, are you keeping well hydrated? Not just drinking water, but electrolytes and watery veggies or not-too-sugary fruits?
Don't have any medication ideas, other than cut-back, but please ask your doc first, as I'm not a doc.
Sorry Gary. Maybe someone will come along with a whole lot better ideas.
Posted by Keebler (Member # 12673) on :
- It's a given that a high percentage of borrelia patients have vestibular symptoms from the infection(s) and from the total toxic load on the liver.
It's also a given that the adrenal system is just functioning on a thread for those with neuroborreliosis. Vestibular stress further slams the adrenals and that takes emotions to the mat, big time.
Regarding balance and anxiety going out when dining out: I suspect inner ear bombardment &/or neuro-toxic excitability triggers from some additive in the food.
* FOOD ADDITIVES *
First, was there even a trace of MSG in your food? You can call at a non-busy time and the restaurant staff can check food labels.
Sulfites as salad preservative?
Gluten in the "Mexican" or "Spanish" Rice (Yep. I found out the hard way that gluten is added to that.)
* VESTIBULAR STRESS * can cause anxiety and all kinds of emotional stress - as the whole adrenal system pulses all sorts of "fight or flight" hormones.
* LIGHTING? Did the restaurant have fluorescent lights? That would trigger such an attack due to the vestibular and pulsating effects. Harsh "naked" light bulbs can also trigger vestibular attacks.
* FLASH PHOTOS ? Cell phone cameras with no manners? Flashes can take a huge toll that you may not even recognize until just one flash photo too many has popped across the room - or right in your face.
* SOUND ? Was there music with a deep or fast beat? Other percussion effects that made it all too busy? Even just all the sounds from people and dishes can be overwhelming.
* ADRENAL and LIVER SUPPORT may need to be reviewed.
* Your dose of MAGNESIUM & CALCIUM - or the type may need adjusting. Same with FISH OIL. Maybe change brands or review your dose.
Hope you feel better soon. Maybe you can scout out restaurants that are more serene. Going at non-rush hour times is also helpful. Calling ahead for a certain table or asking about changes to music or lighting is possible but the reception to that varies widely from place to place.
Outdoor picnics are an alternative for the next 6 months. That's nice.
Planing for intense rest a day (or more) and a day (or more) after an outing can be life-saving for adrenals.
And - remember there is always the car & the ability to ask the waiter to pack up the meal for take away. You may not want to disappoint your kids, and I get that, but if we teach kids early on to have Plan B, Plan C, etc. they will grow up to be problem solvers in advance when things don't work out or are too stressful for them.
They can learn to read their own bodies, too. Some alternative plans can work out to be more enjoyable, too. There is no shame in creating an environment and experience that will work well for everyone.
"Salad Bar Syndrome'' - Sulfites as salad preservative
See the symptom list and the various names to look for on food labels that indicate sulfites: [long list at link above] -
Posted by greengirl (Member # 25316) on :
This sucks. I know I am so so weepy when my symptoms feel worse. All that I can do is remind myself that, last week (or whenever it was) I felt better than I have in a long time and I will feel that good again.
Take it easy.
Posted by ping (Member # 6974) on :
Keebler, I'm in awe. You cover so many bases...
Posted by Keebler (Member # 12673) on :
- Ping, my senses have been thrown so many curves balls. All this has come from years of personal experience. -----------
Lymetwister: right in your very own city of D.C.: sound ratings for restaurants. If one you want to go to has not been reviewed, you can still hold this as some hint to them of the importance. --------------------
Starting April 20, restaurant reviews in the Magazine will feature noise ratings along with the other information -- hours, prices, Web sites, etc. -- already included with the weekly dining column
The ratings will be determined using a combination of a sound-level meter reading and the reviewer's personal reaction to the acoustics over multiple visits. Here's the breakdown:
Quiet (under 60 decibels)
Conversation is easy (60-70 decibels)
Must speak with raised voice (71-80 decibels)
Extremely loud (over 80 decibels)
For the sake of comparison, 50 decibels is equivalent to the sound of a moderate rain shower; 60 decibels represents normal conversation; 70 decibels is akin to the noise made by a vacuum cleaner; and noise levels higher than 80 decibels (conjure up city traffic) are potentially hazardous if listened to for a sustained period.
The brain registers every 10-decibel increase as a doubling of loudness. Thus, a restaurant that measures 80 decibels sounds twice as noisy as a place that measures 70 decibels.
-- Next time you find yourself at a boisterous bistro shouting at your dinner companions over the plat du jour, it might be the result of a restaurant up-sell.
It turns out these not-so-good vibrations might be on purpose. Studies show people drink more, eat faster and leave sooner when the bass is thumping, so restaurants are bringing the noise.
Customers have been sounding off in recent years about the deafening volume level in restaurants. . . .
- Full article at link above. -
[ 05-05-2010, 05:47 PM: Message edited by: Keebler ]
Posted by lyme in Putnam (Member # 11561) on :
I wish I had suggestions - just know it happens to me to and passes, then happens again. The people you live with know you have this, so as disgusted as you are with them seeing this, I try to think of it that they should be used to it by now. I know that that's not much consolation, but it's nothing new to them and makes me almost in a sick way justify it happening. Hope you are feeling better soon. I just lemon water it with everything.
Posted by lymebytes (Member # 11830) on :
Gary - how did the parasite treatment go? Did it help any?
Never accept this, never give up, never believe you won't be well again!
Bicillin for me has a similar reaction, I feel good for awhile, then balance goes, emotions are all over the place, I feel hopeless, helpless and in utter despair and I cry and cry.
Try (as hard as it is) to remember your emotions are tied into the medications and diseases and you will ultimately, slowly will have more good days, look forward to that. The bad days do not last forever..thank God.
Hang in there, I KNOW how hard this is, I have been fighting 4 years now and have wanted to throw in the towel and curl up and die at times.
If your LLmd will allow a week off Rocephin that might help, to clear the toxins. One LLMd has his patients take breaks from abx one week out every month.
Detoxing with Activated Charcoal may be of benefit, it can help clear those toxins out and even help w/cognitive clearing. I also think once the toxins clear, the anti-anxiety meds will work. Just sounds like your body is flooded with die off.
I hope you feel better soon. Love to hear how the anti-parasitic treatment went.
Take care.
Posted by lymetwister (Member # 19590) on :
I'm with a new Dr. and he wanted to treat the Lyme and only Lyme first. Then he wants to get the Co's. I never finished the parasitic treatment with my old Dr.
So hard to tell whats what anymore with this disease. It changes on me faster than the colors of a camelion.
To me, it all just feels like brain damage. I don't get the aches and pains as much as I use to in the extremities.
Sometimes I get the stiff neck and mild body aches, but nothing like in the past.
Even the headaches are better. But inside the head is another story. I'm sure the Abnormal SPECT has much to do with this as much as the infection does, or maybe not :-) Funny, but sad and true.
Gary
Posted by Keebler (Member # 12673) on :
- When we find ourselves on a twisty roller coaster at the top of the spirals, we just have to hold on. If first strapped into a seat with a firmly padded support and a nice headrest, it sure helps a lot. But, if not, we just have to hold on for the ride. It settles out sooner or later. We may gulp but we'd better breathe, too.
None of this is a walk in the park but even some of the fiercest rides are placed among beautiful grounds. Good luck with whatever ride you find yourself on. Opt for the canoe on the pond if you can. -
Posted by RESOLVED. (Member # 24991) on :
Keebler, you can't even imagine how many of us you help by what you write. Bless you!!
Posted by lymetwister (Member # 19590) on :
I opted for the canoe, but it went over the waterfall cliff. I guess the water will be calm once I hit the bottom and able to get back in the canoe. :-) Thanks for the words......
Gary
Posted by Remember to Smile (Member # 25481) on :
Hi, Gary. I've been impressed with postings from you. You've got a good heart and your kids are very fortunate!
Suggestion: Don't try so hard! Sounds like you did too much, too many days in row without adequate rest? Then over the waterfall?!?!
Let's get back on the pond. No wind.
The good times I remember best with my dad: - being silly at the dinner table AT HOME - being silly in the car while my mom bought milk - playing chess in the living room (Just he & I, no sibs) - sitting in a row boat together on the local lake (Just he & I, no sibs!) - talking about animal stories from some of his hunting books (Just he & I, no sibs!) - getting up early to walk to the bakery together when we were on vacation (Just he & I, no sibs!) - looking at slides together of family vacations. I remember sitting close to my dad and getting to see his face up close, the way he moved his hands... I loved seeing MY DAD more than any photo or event.
No big memories of going to restaurants or out to movies.
I appreciated what Keebler wrote about choosing a low-key restaurant or just picnicking!
Can you & the kids relax in your home with a book, deck of cards, or board game?
Could you plan "Kid of the Month" and spend quality one-on-one time with one child for a half-day per month? Rotate turns.
One year my parents started taking my sibs out individually on our B'days. Just the ONE child. SO excellent! I was in 4th grade. I remember the restaurant, what I wore, what I ate, the waterfall by the restaurant, the restroom in the restaurant, being SPECIAL. My B'day is latest in the year. Other sibs had this happen twice. Truly memorable.
If they're little, could your kids sit closer to you when you're stretched out on the couch, now that your aches are decreasing?
Dear Gary, I hope you'll give yourself a break or 3. Listen to your kids and just be around for them, as individuals.
Best wishes, Smile
Posted by sutherngrl (Member # 16270) on :
This sound like me right now. Not the crying part so much, but the "feel better for a few days, over do it, and then crash and burn part". And that in itself makes for an emotional rollar coaster ride.
I think you are actually getting better. Why? Because you use to not have several good days in a row. So give yourself credit for that!
When your canoe goes over the waterfall cliff, don't loose sight of the fact that you just had several days of smooth sailing, something you haven't had for a long time. I suspect that the waterfalls will get shorter and shorter!
Climb back in that canoe and keep paddling!
Posted by gatorade girl (Member # 24896) on :
Gary-I'm not sure if I told you what my daughter's teacher said. I called her because I so worried about my disease affecting her in school. She told me it has had a profound affect on her that has worked to her benefit. She does not sweat the small stuff. Girls in 3rd grade get caught up in fights and bickering. My daughter tends to shy away from this because it is so insignificant to her. She knows stuff like that is simply not important. Your kids know you are there!!!!you might not be able to throw a football or lacrosse ball around, but you are physically there. They know that they are your world and how much you love them.
Hang in there. You are in good hands. Like Dr. J's lab lady said to me...its like a Geico commericial. You are in good hands. She told me this is a final stop. Look at all your gains!!!! You yourself said you really have less pain and headaches. The headaches were so debilitating. Just remember it is like peeling an onion...you keep taking away the layers. Remember how bad I was and look how far I have come. I still have Mt.Everest to climb, but like you we finally traveled across the world and have arrived at the mountain.
Posted by carly (Member # 14810) on :
Gary, I just skimmed most of the answers here, but some of the comments really jumped out at me.
Smile had such wise advice. Parents so often feel they have to do things to make their children feel loved and special, but that's not so true. You just have to be there. It's the simple things that matter most.
Posted by Remember to Smile (Member # 25481) on :
Gatorade Girl, you're good!
quote:Originally posted by gatorade girl: look how far I have come. I still have Mt. Everest to climb, but like you we finally traveled across the world and have arrived at the mountain.
I appreciate this analogy and will try to keep it in mind!
I was unable to attend my fav brother's Caribbean wedding mostly 'cause I couldn't imagine myself struggling with a backpack or carrying ANYTHING with my painful limbs and esp. painful knees. And riding over rough roads in a crowded tap-tap? Now I know it's Lyme and I will get better in the next few yrs, not just worse & worse unending.
p.s. - If you guys find the smooth lift to the comfortable, relaxing lodge at the top serving just-right hot chocolate, plz save me a place in line! Smile
Posted by gatorade girl (Member # 24896) on :
Thanks so much Remember to Smile.
Posted by Keebler (Member # 12673) on :
- Trade the canoe for a rubber raft. It takes waterfalls easier. -
Posted by massman (Member # 18116) on :
IME the canoe is easier to drag in to shore + empty than the raft is.
Posted by sutherngrl (Member # 16270) on :
Maybe an inner tube???
(Not to take away from the seriousness of your suffering)!
Its an awful ride. You just have to keep going.
You are a good father. Give yourself some credit! Beating yourself up just adds to the stress which in turn hinders your healing.
As before this will pass and you will have another round of good days. Slowly but surely the good days will increase. Its just the face of lyme.